FrancesName Frances Clair

Age 29

Where do you call home? Chicago, IL

Who do you live with? My parents, one sister, our dog, and my cat.

What's a typical day for you? When we aren't experiencing a global pandemic, I wake up in the morning and work on fictional writing and then go to work on weekdays. I work at an after school program for elementary school children, and I am one of the adults in charge of the program at that school. I've worked there for eight years.

How long have you known you are living with FA? I was diagnosed in February 2007. About a year earlier, my pediatrician was alarmed by my lack of balance. She sent us on a hunt that ended in a blood test to diagnose FA a month before I turned 16.

Are there any others with FA in your family? Nope. My parents feel very lucky that out of four children, I was the only one to get FA.

Describe your transition from walking to walker/wheelchair. I was very stubborn. I fell multiple times a day but would refuse mobility aids. When I blew out my ankle, I finally started using a walker. When I broke my toes, I finally started using a wheelchair full time. I went from walking unassisted to using a wheelchair full time in the span of 6 years.

What do you like to do to stay active and what type of exercises work for you to stay strong? I unintentionally work out. I have built up enough strength transferring myself multiple times a day. I have to be active when I am at work. I wear certain shoes to stretch the tendons in my feet. I like to dance. One day I'd like to try boxing too. That sounds fun.

Do you have any hobbies or special interests? Writing, music, dance, art. I've written stories since I was eight and listen to an average of 10 hours of music a day. I am behind in my reading goal this year, but I love books. Recently my best friend and I decided to learn Korean. I might do some painting again. I've been writing snail mail letters to my friends.

Frances CollageWhat is a good trick to make daily life easier? Find those little comforts. For me it's music. I turn music on, and it makes everything better. Also, just knowing tomorrow will always be a new day, a fresh start.

When FA gets you down, what do you think/do to feel better? Blast music and talk things through with my best friend and then remind myself of the good things in life. And then blast more music.

What is one way living with FA has POSITIVELY affected your life? FA led me to the Association of Horizon, which is a summer camp for adults with physical disabilities. My camp friends are some of the best people I know, and through the camp, I met my best friend. I am currently the Vice President on the volunteer board for the Association of Horizon.

What is a favorite motivational quote of yours? Currently, it's "You can't hold me down cause you know I'm a fighter."

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Find what makes you happy. Things will be hard, and other people won't always know what to do or say, so find all those things that make you happy. You are in charge of your own happiness. Oh, and don't let what you read on the internet about FA rule your life. It can make everything sound extremely dire, so don't listen to it and just live and be happy.

What is the first thing you want to do when a cure/treatment to FA is found? Run and never stop.

"I have FA, but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I am still just a human trying to live a life. Sure, things would probably be different if I wasn't disabled, but the person I am would be the same. My likes and interests and personality would be the same with or without FA. FA took me down a different road in life, but I'm still who I'd always be.

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